That Aspie Label And How I Feel About It

When I first became part of the autistic community many of us identified with the label Aspergers Syndrome, and called ourselves ‘Aspies’. So much so that when the Powers That Be decided to delete it as a separate diagnosis many of us protested this. Gradually however most of us began to understand why it was no longer a viable diagnosis, and later still, many autistic advocates became vehemently opposed to the use of it.

My personal feeling is to no longer use it for myself. There are three main reasons for this.

1) The history around Hans Asperger. I haven’t been able to find out definitively whether he was an outright Nazi, a more-or-less reluctant collaborator, or just trying to save as many as he could from the Nazi ‘final solution’. He must, at the very least, have known what the Nazis were doing to the more obviously disabled, but how much could he have prevented this? How many could he have saved, how many did he save? I admit, I haven’t done much research for myself and opinion seems to be divided, even amongst autistics. But whatever the truth, he’s a controversial figure, and I’d rather stay away from any label that identifies me with him.

2) The whole ‘Aspie Supremacy’ thing. Basically, there is a subset of ‘Aspies’ who believe that Aspies are superior not just to other autistics, but to the rest of humanity. They tend to hide themselves away in small, closed groups online, and not come out to play much, but their underlying philosophy is still present. I can understand their fear of being associated with the most powerless, abused and degraded amongst us, but they are not doing anyone any favours with their elitist attitude.

3) (The most important reason) There really, really AREN’T any big differences between those who used to/still do label themselves ‘aspie’ and the so-called ‘real autistics’. It’s simply a way for the ‘experts’ and ‘martyr mommy’ types to divide and conquer. To excuse, on the one hand, their treatment of the more ‘obviously disabled’ among us, while wielding a stick over the rest of us autistics - ‘don’t group yourselves with them, or we’ll treat you like we do them’. But truthfully, attempts to find a clear difference have all floundered in the face of the complexities of autistic presentation, and our ability to progress and change, even when people don’t think we can. There isn’t a truly clear line between ‘severe’ and ‘mild’ autism. All the criteria basically amount to ‘how well can you mask and present as “normal”?’

So there’s that. HOWEVER – and it’s a big HOWEVER – I refuse to criticise, reject, put down, exclude or otherwise attack anyone who DOES still describe themselves as ‘Aspie’. They may have multiple, and perfectly valid, reasons for this. And frankly those reasons, or what labels they use are none of my business. (I’ve also noticed that some tend to go back and forth between the two terms, even when describing themselves.) I’ll tell anyone who asks why I don’t use the terms, but I won’t insist on them following my lead. To be honest, I think those pesky ‘functioning’ labels are a far bigger problem, as they can do real harm.

A big part of my adopting this approach has been my move away from the more strident autistic activists, the nit-picking purists who seem to have no tolerance for anyone who doesn’t follow what they have decided is The Only And Perfect Way to be autistic, and who will vehemently attack anyone they decide is The Enemy based on this True Way. I’ve encountered people like this before in various social movements, and find them tiring. ‘Drama queens’ is yet another good description of them, as they seem to relish the attacks and the consequent drama. I always end up dropping away from them.

Moreover, I’ve seen the results of their attitude. For instance, I’ve seen them attack one activist who refused to stop using the term aspie. Their attack was so vicious and prolonged that the activist in question eventually left the autistic community altogether… and eventually joined forces with an autistic organisation in their own country with a very dubious record – not quite A$, but not far off it. So they literally drove an otherwise good autistic activist into the arms of the opposition. Literally.

So no, I have chosen for myself, but I refuse to criticise anyone else for their choice. Because it is THEIR choice. And that’s good enough for me.

Privilege, Prejudice and My Life

Since I was a child, I’ve been keenly aware of injustice and inequalities. While I’m sure that a big reason for that is being autistic, I think another part is that I’m different from ‘The Normal Human’ of the Western world - the white, middle-class, cishetero, able-bodied, neurotypical male, against which everyone else is seen as lacking or inferior or just unworthy even of notice. I just don’t fit into that ‘normal’ in so many ways, and I’ve always known it, even before I could label it. The list of ‘othering’ factors I experience is long.

Some would assume woman is on that list, but although I was born with a female body, and certainly have experienced sexism, I’ve never identified as a girl or woman or even female. It just wasn’t me, but it took me a long time to define that I’m not actually either gender in my inner self/identity. There are different labels for this, but I feel non-binary best describes me. But of course it marks me out as different from Normal Man too, in a different and even more marginalising way.

Despite this, or maybe even because of it, I am definitely a feminist. Even as a child, I remember protesting the privileges that the males in my family had, though everyone looked at me like I had lost my mind. When I eventually discovered feminism, it felt tailor-made for me. I threw myself into trying to be a ‘right-on’ feminist, to fit in to the required appearance, behaviour, image. It was a long while before I realised so much of it was just another set of expectations to trap me in. Now, though I still agree with the central tenets of feminism, I have found my own way to be ‘liberated’.

Along with feminism I discovered, or rather re-discovered, my sexuality. I called myself lesbian for years, but truthfully, I’ve never liked the word. These days I call myself gay, it doesn’t feel totally right either, but I’ve yet to find a better one. But whatever I call myself, I never felt accepted by the lesbian community any more than I had been anywhere else. I just didn’t, and don’t, fit the mold here either. Being ignored, snubbed, overlooked, excluded etc, got tiresome. So eventually I quietly dropped out of the lesbian community. I doubt I was missed.

Through feminism and attending university, I also came to a consciousness of class. By associating with middle-class people, I realised that I’m not. If you think I should have realised that before, you’re probably right. But it truthfully never occurred to me. I thought class was something that only happened in the UK, us New Zealanders tend to believe ‘we’re all equal’. I soon learnt otherwise, and for a long time I blamed the struggles I was having on classism.

Meanwhile of course I developed physical disabilities. The first of course was CFS, or ME as some call it. I’ve had this for forty years now, and it’s been devastating in its effect on my life. More recently, I’ve developed arthritis, diabetes, low thyroid, a crapped-out ankle, acid reflux and probable IBS. Other problems come and go. There are so many things I can’t do, can’t participate in, together they all thrust me to the margins of the able-bodied world.

And while I was acquiring these physical disabilities, I realised that I’m autistic too. And that I have sensory processing disorder, executive dysfunction, alexithymia and auditory processing disorder with it. The list of ‘conditions’ I have just grew and grew, and the sense of being a ‘marginal person’ just grew and grew with it…

There are of course a few areas in which I could be said to be privileged or ‘Normal’ of course. I grew up in and live in a Western country. I got to university, even if it wasn’t till I was 26 and a ruined health meant I never completed it and likely never will.

Religion? Well I suppose I was nominally Christian in my younger years, but religious differences between my parents meant that it wasn’t exactly pushed on us, and I grew out of it eventually. Since then I’ve gone through the women’s spirituality movement, the New Age movement, a semi-demi-cult and now… nothing. Agnostic probably describes me the best, if I must use a word. Perhaps it’s a privilege in itself, to be able to openly describe myself this way, and reject religion, a prerogative that many in other countries don’t have.

But here’s a funny thing – the one area in which I don’t experience oppression or being ‘different’/in the minority is the one that has often concerned me the most, and which I have probably done the most activism in. And by this I mean race.

I’ve had an awareness of racism since I was a child, possibly even before I was aware of sexism. It’s important to note that I was a post-war child, yes (I sigh), a boomer. But what this meant was that World War Two and the Holocaust were recent collective memory. I didn’t actually meet any Jewish people till later, but I remember becoming aware of how if someone was mean or tight-fisted, people would say ‘don’t be Jewish!’ I made a conscious decision not to use that term ever again. Yes, as a child. Call me precocious.

At some point after that, when us kids were playing ‘Cowboys and Indians’, I found myself wondering why the Indians were always The Bad Guys. I can’t remember if I tried to change the rules or suggested a different game, or maybe we just grew out of it, but at some point we did stop playing it. I don’t know if any of the younger generation still do.

It must have been somewhere in my teens that I first heard of South Africa’s apartheid regime, and was instantly opposed to it. I just knew in my bones it was wrong, and the more I learnt, the more that feeling was confirmed. About ten years later came the Springbok Tour of 1981, which of course was seen by many as the NZ Rugby Union supporting the apartheid regime. Like many Kiwis, to me rugby is The Game, but that made the shock of the Tour only worse. I could not believe that anyone would invite those oppressors to my country, and willingly joined the protests against it.

It was during these protests I became aware of racism here, thanks to Māori activists. That’s not to say it had totally escaped my awareness, but it hadn’t been thrust in my face before that. Along with many other white people, I joined the anti-racism movement, spending more time and energy in it than feminist activities. This lasted several years until health issues meant I dropped out of all political activism. But I’ve continued to see my own racism as something to work on, root out of my subconscious, and I do my best to challenge other white people’s racism too, when I can. It’s an ongoing thing.

I’m conscious of my racial privilege. I know that I can walk around a department store without having staff follow me in the assumption that I’m going to shoplift. I can walk down a street in Remuera (Auckland’s swankiest suburb) and not have people assume that I’m there either to clean a house or rob it. And that’s just the surface stuff – my culture, language or ancestral lands are not under threat of being wiped out, destroyed, suppressed or stolen. I’m not likely to be harassed or beaten up by cops or ‘profiled’ on account of my race. And so on.

The thing that puzzles me though is why for so much of my life, I have so often been more concerned with racial issues than the areas in which I am one of the underdogs? Is it because I have so little privilege in other areas I am more aware of the things I don’t have to experience?

I’m really not sure.

Anyhow, I just wonder if anyone else has a similar story to tell. What are YOUR privileges? What are the issues that have concerned you the most, through the course of your life? Are they the ones you suffer from, or the very ones you don’t? We autistics usually have a keen sense of justice, but where has your focus been?

Thoughts on Moving Back to Auckland

I recently moved back to Auckland, the city I grew up in, after about 35 years away. Obviously, lots of things have changed.

I’ve changed, for one. I left the city as a naive thirty-something, still hopeful of a happy future despite having already experienced poverty, a string of romantic, social and friendship failures and some health problems. I’ve returned older, grumpier, way more cynical and with way worse health problems. Much of the middle years have been disastrous, with more poverty and more failures including that relationship, and much moving around the country from rural to small town to larger town locations, before finally realising that my heart was really still back in the city. Along the way, I’ve learned a lot, including way more self-awareness and how to stand up for myself.

So I’m different. But the city is also different. I didn’t expect it not to be of course, I have visited plenty of times over the years. Visiting is not quite the same as living in a place though, and the changes have really struck me now I’m here.

There are three things in particular that are noticeable. The first is housing. Starkly modern skinny townhouses jutting two or three stories into the sky are crammed in next to the tired old bungalows of the 50s, 60s and 70s, and even the occasional abandoned house. The mix of people living in them reflects this contrast.

Because the second thing I’ve noticed is the far greater diversity of peoples in Auckland now. There were always some non-white people here even when I was growing up, mainly Māori, Pacific Islanders, Chinese and Indian (from India I mean, not Native Americans). But now there’s a far bigger panorama. Don’t get me wrong, I’m fascinated by this, not appalled! They add so much to the city, including to the selection of foods available. (Yum!)

Simply for fun, I find myself often playing the game of ‘what language are they speaking/what nationality are they’. A few weeks ago, I heard people speaking what sounded like Spanish near my home. Spanish! In West Auckland! This would have been considered bizarre when I was growing up, but I was enthralled. (They were probably South American immigrants, of which there are quite a few in New Zealand.)

The third thing, which I kind of knew but had to be reminded of, is though officially Auckland is ‘The City of Sails’, it should really be called the City of Cars. Basically, you need a vehicle to get anywhere except your local shops. (I haven’t braved public transport yet.) As far as West Auckland goes, a lot of this goes back to the suburban ‘wastelands’ built out here in the decades after the war.

In the mid-70s, my then-husband and I looked at building a house out on what was then the edge of the city. We couldn’t afford it in the end, but what struck me was just how isolated these housing subdivisions were. There was literally nothing out there but the houses plonked down in the landscape, some footpaths, and the roads themselves. You were considered wealthy if you had a driveway or a fence. There were no parks, libraries, shopping centres, medical or community facilities, few buses except for morning and afternoon commuters. It was just… empty. So people made their own amusements, and acquired cars, because how else were you to get anywhere? I think this was the beginning of the classic ‘Westie’ culture (think like the Aussie ‘bogans’, I’m sure every country has its equivalent). My generation of Young Things were I guess ‘proto-Westies’.

Something similar must have been happening in the rest of Auckland, because now the city is choked with cars. And it’s built for them too, even the newest parts. There are footpaths around the city’s vast shopping malls and centres, but they’re still obviously arranged around the needs of cars and their occupants. And despite various efforts by central and local government to encourage public transport, I don’t think that’s going to change any time soon.

So here I am, adjusting to this, after over 20 years in a town I could walk at least halfway across on a good day. Never mind. The tediousness of motorways are far outweighed by the new and fascinating – there are whole parts of the city that didn’t even exist when I lived here last, even much of the old has changed almost beyond recognition. I’m enjoying exploring all this and (re-)acquainting myself with old and new.

And the annoyances are just little things, like I’m still trying to find somewhere nearby where I can buy all of the supplements I need, rather than having to go several different places, and I still haven’t found a good (and inexpensive) unisex haircutter yet. The gender division is hard around here, very masculine men’s barbers and women’s hairdressers which reek of perming lotion (which makes me ill). Um, no thanks.

So yeah, little problems, some adjustments, but overall, I’m glad to be back. Home has changed, but so have I. It’s still Home.

Fearing Other People

Almost all my life, I have been afraid of other people.

It started quite young, when I first began to be aware that I was ‘different’ to others, which I interpreted as ‘lesser than’. I had only those around me to compare myself to, and it was obvious that I lacked something, some qualities or understanding of the world, that they had. That I might have other qualities just as good never occurred to me. This was the start of my fear of being ‘exposed’, my inadequacies painfully revealed for all to see.

My frequent social blunders and people’s hostile reactions added to my anxiety. I never knew when the next attack would come, or from where, let alone why such truckloads of disapproval would be dumped on me. In fact the older I got the more expectations it seemed others had, and the more I seemed to make mistakes no matter how hard I tried - and believe me I tried so hard – and thus my fear of other people and their reactions to me continued to grow.

Even after I began to acquire some social skills, or to mask as I’d now call it, I was always afraid of being exposed – because ironically these skills actually seemed to increase the risk that at any moment the mask might fall off, and I would be revealed as ‘faking it’. I was often subtly rejected anyway, but I felt sure that a more complete and utter rejection would follow if the full extent of my inferiority was revealed for all to see.

I think now that I probably had social anxiety disorder during this time. Not that I would have ever admitted any of it to any counsellor or psychologist, for fear of more judgements that would have left me feeling even more inadequate, more stupid, more everything ‘wrong’ and inferior. Looking back now, my tension and anxiety must have been obvious to many, but I think I was probably dismissed as ‘neurotic’ or similar. Some did try to help me, I remember being told to ‘just relax and be yourself’. The problem was when I followed that advice, I got more criticism and hostility, not less. I would withdraw again, more confused than ever. I was caught in a vicious circle of shame, low self-esteem and fear, which led to more shame, lower self-esteem, more fear, around and around.

And then came ‘that’ relationship. As the relationship progressed, my partner made it more and more plain that in her eyes, I didn’t measure up, as a partner, as a woman, and quite possibly as a human being. Nothing I did or said was good enough, and as fast as I ‘fixed’ one thing I’d done or been, another would crop up, the nagging criticism was constant and devastating. I lived in greater anxiety than ever, trying so hard to please, to be and do what she demanded. None of it was enough, I wasn’t enough, I could never be enough, it seemed. My self-esteem plummeted ever lower.

Eventually, of course I burnt out. I gathered up what little strength and shreds of self-regard I had left, and exited the relationship. I was empty, lost, and broken, with nothing to give anymore. I just didn’t have the capacity.

I retreated to live alone in a tiny cottage in the country where I barely saw anyone for days at a time. Combined with being relieved of the pressures and demands of an emotionally abusive relationship, I now had lots of time for self-examination. It was not an easy time, as I finally admitted to myself just how terrified of others I was.

I began piece by piece to unravel and let go of all that terror, a process that in some ways continues today. I had no understanding of what caused that terror, that wouldn’t come for many years more, and I still thought of myself as an inferior specimen of humanity, but I started to not care about other people’s opinions and judgements of me. It seemed to me that they would judge me and criticise me no matter what I did, so what was the point of worrying about it?

Fast forward several years, and the realisation of being autistic. Through meeting other autistics, I began to slowly realise my ‘difference’ was not an inferiority at all, but a unique way of being. It took some time, but my self-esteem began slowly to repair. My fear was slower to decline, but as I grew more confident in my autistic self, it did slowly diminish. More years went by, and I realised that I’m non-binary, aromantic, and probably either demi-sexual, aceflux or something similar; and more recently that I’m almost certainly ADD (without the H). Understanding all of my ‘differences’ has further alleviated my fear and shame. Community was crucial to this, but so was a willingness to look at myself.

And now? I would say that my fears are more of a knee-jerk twitch, an ancient reflex soon quieted. Where it is tangible, it’s more of a pragmatic wariness rather than outright terror. At home, by myself, I can relax. But when I venture out, I’m always at least a little on guard. Some individual or, say, a group over there might be laughing now, but I never know when some minute error on my part means I become a target. (And yes, it has happened.) Better to move on and avoid them. And given I can only recognise potential abusers if they follow a pattern I’ve seen before, it’s just safer to avoid anyone I don’t know, with new people added only slowly, as they prove themselves.

The truth is that I’m still in many ways in retreat from the world. I have no permanent job, no partner, no dependent children, multiple health concerns and little involvement with the community at large, which makes it easier to stay solitary. My main social interactions are online, which I handle way better than IRL interactions. The bottom line is that I still don’t trust the world, or people.

The long years of fear have taken their toll of course. I feel that a lot of my health problems, especially CFS, low thyroid, GERD, IBS and possibly even the diabetes are the end result of all that stress and anxiety. You don’t gnaw on your own liver for decades without paying for it.

I’ve also realised that the flip side of fear is anger. There’s a lot of rage stored up in me, fearing the world has become FTW. Sometimes the anger is focused on a single person (most notably my ex), but sometimes it’s just a more generalised thing. It is, alas, mostly bottled up with little outlet for it, other than creative ones. Another kind of gnawing on myself. I navigate this every day. And I don’t expect anyone who isn’t autistic, or some other kind of neurodivergent, to understand it. How can they? Who can, if they haven’t lived it?

This is the first time I’ve admitted all this publicly. It feels cathartic to do so. Once upon a time, I could never have done it at all. That’s progress, I guess, but the world, and other people, remain the same. I remain the same. It’s only how I deal with it that’s changed.